BrianneSchwantes

“It’s Never

an Option

Not to

Succeed”

My birthday: April 9th, 1980

Rare Disease: Osteogenesis Imperfecta (brittle bone disease)

At birth: 13 broken bones at birth Parents told that I wouldn’t

live through the night

Today… .. I

• am a college graduate

• live in Washington DC

• work - National Institutes of Health

• am a national public speaker

Disabilities affect the entire family

Parents need to set the example

• If they are positive, their child will be positive.

• If they are hopeful and optimistic, their child will be too.

My sisterElizabeth

My parents: Terry & Terry

Don’t forget about siblings

Make them feel included and part of the family

Don’t focus solely on child with special needs.

My Doctors: 1988

Youth - Active Role in Medical Care

1. Your medical team isn’t just your doctors. Parents, children, and family members need to play an active role in dealing with a chronic condition.

2. Questions and ideas should be encouraged.

As the child gets older, theyshould take control overmore of their healthcare.

They have a responsibility tolearn as much as possible.

Balancing Health &…School, Life & FUN

3. Person first….who happens to have Child/teen are not their disability. i.e. “I may have Osteogenesis Imperfecta, but that is not who I am.”

4. Balancing Health Issues & Living, Learning andHaving FUN!

Despite problems that they mayface, remember that they are stilljust kids. Between doctor’sappointments and school, makesure there is plenty of time tohave fun, to be silly, and to getinto (safe) trouble.

My doctors: 2005

Youth &….Informed Decision Making

3. Let children and youth participate in all decision making. assent to consent

Lead them towards the best choice, but ultimately it is up to the child/youth to have control over his/her own body.

Decision Making: Solo, Circle of Support, Health Surrogate, Limited to Full Guardianship

Transition to Adulthood: Life Span Prep

4. Transition periods are normal for everyone, special needs or not.

Children and Youth with special health care need/disabilities often require special planning to make it as smooth as possible. Start Early!!

5. Set goals but not time limits. A goal can be “graduating from high school” but it may take 4 years or it may take 8.

Community Service & Volunteerism

Give your child the opportunity tohelp others…rather than alwaysbeing the one who is being helped.

Volunteerism contributes to self-esteem and sense of community.

Community service is a non-competitive way for a child or teen tolearn to work together as part of ateam.

PublicSpeaker& Writer

Support Dreams & Aspirations

EDUCATION• Inclusive education with friends

• Participate - clubs & activities to promote social skills.

HEALTH & WELLNESS

• Understand about diagnosis• Learn how to stay well longer

ADULTHOOD• School, Work, Community• Medical care• Insurance

Brianne Schwantes

www.brianneschwantes.com